Positive Life NSW

Mia Dawson has been living with HIV for 16 years. She looks at the resources and sites she has found to be the most useful when accessing information on treatments for women with HIV.

Being a HIV positive woman in Australia today is a far more positive experience than a decade ago. However you don’t need to look too far before realising that the vast majority of information on treatments and health challenges is produced predominantly targeting the male population. There is a pronounced lack of gender-specific information on treatments, and what does exist often requires knowledge only marginally less than a full medical degree to decipher and understand. Added to this is the complexity of the unique health challenges that women face encompassing reproduction, menopause and gynaecological issues, side effects of medication specific or more common amongst women, and differences in drug interactions according to one’s ethnicity. To quote a doctor on one website, “Women with HIV are different from men with HIV physically, psychosocially and emotionally, as well as in their role as caregivers for their families and communities.” ¹

One thing that living as a woman with HIV for over sixteen years now has taught me, is that there is no substitute for education and knowledge when it comes to seeking advice on treatment. By this I mean, education as in educating oneself on the options that exist, and practical knowledge on where to go and whom to see. A good and open relationship with one’s doctor is paramount when discussing treatments, but as in all health matters it is probably best to take a proactive approach to be able to make your own informed decisions and choices.

As women, we often feel as though we are a minority within a minority when it comes to the HIV sector. Yet sadly, women constitute over half the number of people living with HIV worldwide today. In a report published by Positive Women, Victoria in September 2009 the authors acknowledged “In Australia a great deal of communication about HIV has been predominantly in the gay community… Women are disadvantaged by a lack of timely and accessible information about HIV.”² Whilst in this context they are relating to the lack of gender-focussed campaigns about HIV/AIDS, it could also arguably refer to the lack of womenspecific information on HIV particularly as regards female physiology, treatments and side effects.

Women traditionally have been underrepresented in clinical trials, with initial research on the effectiveness of HIV medications being conducted on men. The doses of antiretroviral drugs were determined after trials involving primarily men, and research has indicated that women may receive a higher dose of a drug in their blood level because they generally weigh less than men. Having higher blood levels of medication in our bodies can be an advantage and a disadvantage. On the upside it means that there is more of the drug available to fight the HIV virus, but the flipside is that it could mean there is a greater chance of having side effects. It has also been suggested that gender differences in side effects may be due to an interaction between HIV medications and female hormones. But until further research is conducted, specialists advise that women should continue taking medication at the levels recommended for all adults living with HIV. Again, I would reiterate here that one’s individual needs and requirements where treatments are concerned, should be part of a conversation that women should be having with their own HIV specialist. However whilst more information has recently become available on gender differences, there is still a lot that we don’t understand about the ways in which HIV affects men and women differently. For example, women with a lower viral load at seroconversion, may have a faster disease progression than men with a higher viral load.³

Although generally the efficacy of HIV treatments has produced similar results for women as men, there are a number of side effects from medication that differ for women. Researchers have found that women are more likely than men to experience liver toxicity and rashes when taking the drug Nevirapine. Women also seem to be at a greater risk of lactic acidosis, an increased lactate level that causes muscle problems and liver damage when taking certain antiretrovirals. Pancreatitis has also been noted at higher rates in women on some anti-HIV medications. Women also experience different types of body shape changes to men, and tend to get an unusual fat redistribution in their breasts and waists, while a recent study has shown that the drug Efavirenz can induce breast cancer cell growth in some women.⁴ Other research has indicated that although HIV infection increases both men and women’s risk of osteoporosis, the risk for women is three times higher than that of men. One of the side effects of the drug Truvada is a decrease in bone mineral density, and for women taking HRT to counter the effects of menopause, Nevirapine has been shown to cause oestrogen levels to drop.⁵ Another finding is that HIV positive women were twice as likely as positive men to suffer from depression,6 yet commonly used alternative remedies to treat depression such as St Johns Wort have interactions with a number of HIV medications resulting in the possible loss of HIV suppression.

Other drug interactions include Nelfinavir and Retonavir which decrease levels of the oral contraceptive pill. Finally, menstrual changes and irregularities associated with some antiretrovirals are another example of a side effect that can affect women but not men. For women who are pregnant or may be considering having children in the future, Efavirenz should not be prescribed as it may disturb the growth and development of an embryo or foetus.

Many women opt to use complementary therapies in conjunction with conventional medical treatments. This holistic approach to care aims to treat the whole body by looking at the interrelationships between body and mind to enhance one’s quality of life and improve wellbeing by, amongst other things, helping to strengthen the body to cope with treatments including side effects. Complementary therapies include, but are not limited to, acupuncture, massage, herbal medicines, traditional Chinese medicine, meditation and visualisation, vitamin supplementation and nutrition, yoga and physical activity, naturopathy, and aromatherapy. Again it is important to seek as much information as possible on any approach and consult with your health practitioner, as some herbal preparations may interact with HIV medications. For women wishing to explore this approach, ACON’s Positive Living Centre offers a variety of complementary therapies including Swedish/remedial, Lomi Lomi and Shiatsu massage, Reiki, Bowen technique, acupuncture and naturopathy as well as yoga and exercise classes and a vitamin service.

Useful resources and sites

The following is a list of online women specific resources on treatments divided into local (Australia) and internationally. This is by no means a definitive list, rather an overview of the sites and resources I have found to be the most useful when accessing information on treatments for women.

Local Resources

Treat Yourself Right – Information for Women with HIV and AIDS 3rd Edition (Published by AFAO and NAPWA)
A comprehensive resource for women covering amongst other things treatments, pregnancy, menopause, and genital and reproductive health. It also has an extensive contacts and glossary section at the end of the document. http://www.afao.org.au/library_docs/resources/TYR_07.pdf

Women and HIV: A Series of Factsheets for Women About HIV
Family Planning NSW in conjunction with ACON, Pozhets (the heterosexual HIV Service) and the Multicultural HIV/ AIDS and Hepatitis C Service has recently updated and relaunched a series of six factsheets aimed at providing information about HIV for women who have been recently diagnosed, including women from culturally and linguistically diverse backgrounds. One of these factsheets provides basic information on treatments. http://www.fpnsw.org.au/625547_8.html http://www.acon.org.au/hiv/news/women-and-HIV-factsheets

Next Steps: (Published by AFAO, NAPWA and ASHM)
A booklet generally for those who have been recently diagnosed. However there is a section on pages 36 – 37 relating specifically to women, entitled ‘What Does HIV Mean for Women’ and divided into ‘Women and Treatments’ and ‘Having Children’. http://www.afao.org.au/library_docs/ANET/NextSteps.pdf

International Resources

NAM (National Aids Manual) - AidsMap (a UK site)
NAM and AidsMap aim to provide and share independent, clear and accurate information about HIV and AIDS.
HIV Treatment for Women  http://www.aidsmap.com/Treatment-for-women/cat/1467/

POZ.com
http://www.poz.com/women

The Body (a US site)
Provides a fully comprehensive HIV/AIDS resource.
HIV/AIDS Resource Center for Women http://www.thebody.com/content/art44411.html HIV/AIDS Treatment and Women http://www.thebody.com/index/treat/women.html
Women Specific HIV Treatment Research http://www.thebody.com/index/treat/women_research.html Women Specific General HIV Complications http://www.thebody.com/index/treat/women_oi.html
Women & HIV – Effect of Sex/Gender on Response to Antiretroviral Therapy http://img.thebody.com/legacyAssets/25/98/gender_haart.pdf

The Well Project (a US site)
The Well Project is an initiative conceived, developed, and administered by HIV+ women and those who are affected by the disease.
Home Page http://www.thewellproject.org/en_US/ index.jsp
Women’s Center http://www.thewellproject.org/en_US/ Womens_Center/Treatment and Trials http://www.thewellproject.org/en_US/Treatment_and_Trials/
Women and HIV http://www.thewellproject.org/en_US/HIV_The_Basics/Women_and_HIV.jsp;jse... 8G1!1667561156

What Works For Women – Evidence for HIV/AIDS Interventions
An international site aimed at developing policies and strategies to address the needs of women and girls as part of the global HIV/ AIDS response. It provides a comprehensive evidential-based review spanning 2,000 articles and reports with data from more than 90 countries, detailing a number of interventions for which there is substantial evidence of success including prevention, treatment, and care and support. http://www.whatworksforwomen.org/

Further Organisations Who Provide Resources for Women Living with HIV, based or with representation in New South Wales
Positive Life NSW http://positivelife.org.au/
ACON (AIDS Council of NSW) Women and Families Affected by HIV Project (Follow the links from the main homepage) http://www.acon.org.au/
AFAO (Australian Federation of AIDS Organisations) http://www.afao.org.au/
NAPWA (National Association of People with HIV/AIDS) http://www.napwa.org.au/
The Heterosexual HIV/AIDS Service (Pozhets) http://www.pozhet.org.au/

You can also access these web addresses on Talkabout online www.positivelife.org.au/talkabout

In conclusion I believe that what works for women is ultimately what works for you as an individual. Being aware of the treatment options available in consultation with your HIV specialist or doctor, allows you to feel empowered and make informed choices about your overall treatment and quality of life. Special thanks for their assistance with this article to Samantha Fieldes, Women & Families Project Officer; Steve Wiggins and Jae Condon at the Positive Living Centre.

References

1. Mardge Cohen M.D, HIV Expert Interviews: Q 1 When a woman with HIV visits your office for the first time, do you evaluate her care differently than you would a man’s? (The Body.com HIV/AIDS Resource Center for Women, 2007-2009 Body Health Resources Corporation), http://www.thebody.com/content/art45921.html
2. Dawn Wilcock & Rachel Lennon, Women and HIV: the impacts of stigma and discrimination, (HIV Australia, Vol. 7 No. 3, September 2009, Australian Federation of AIDS Organisations), http://www.positivewomen.org.au/images/stories/positive%20women%20victor...
3. The Well Project, Women and HIV: Is HIV Different forMen and Women? (The Well Project, updated August 2010), http://www.thewellproject.org/en_US/HIV_The_Basics/Women_and_HIV.jsp;jse... QGt8G1!1667561156 AFAO, NAPWA and the NAPWA Women’s Network, Treat Yourself Right: Information for Women with HIV and AIDS 3rd Edition. (AFAO, November 2007), pp 19.
4. M.J. Sikora, J.M. Rae, M.D. Johnston & Z. Desta, Efavirenz directly modulates the oestrogen receptor and induces breast cancer cell growth, (HIV Medicine, 2010), Vol. 11 pp 603-7.
5. Kathleen M. Squires MD, The Impact of Sex/Gender on Antiretrovial Therapy and Its Implications, (BETA, Summer 2003), p. 42, http://img.thebody.com/legacyAssets/25/98/gender_haart.pdf
6. The Body, Women and Depression: Depression is More Common in Women, (November 2009). http://www.thebody.com/content/art58419.html?ic=700100